Confessions of a Closet Aspie: Women & Girls on the Autism Spectrum
As a private person, the idea of sharing my own story feels a bit like parading around naked in a puritanical church during the Victorian Era and the fact that Timothy Leary and Richard Alpert relied in large part on their own trips to write The Pyschedelic Experience offers me little consolation for my own circumstance. But sometimes, for the sake of an ideal, people need to set aside their hangups. When I wrote the first draft of Autism Translated I wasn't planning on coming out of the closet but that is exactly what happened and it wasn't graceful. I left my safe little private space kicking and screaming.
At first I wasn't even aware that I was in a closet. Sure, friends and colleagues had hinted at the idea for years. They teased me about being Spock or an undiagnosed aspie. They rolled their eyes whenever I got my hands on one of their computers to make a minor fix and these same eyes distinctly glazed over whenever I had an animated conversation with a client about the contents of the index in the first book of the Eragon series or some other equally obscure topic that no one else seemed to follow. Did I mention my friends and coleagues are autism experts?
But me on the spectrum? Naw! I understand symbolism, have empathy and get the grey areas pretty darn well. And I just demonstrated that when the occasion calls for it I am capable of utilizing informal expressions such as "naw" and "darn" pretty darn well too. Case closed. But rarely is anything in life that simple.
So here is the story of how I came to the realization that I could understand symbolism, have empathy, get the grey areas and fall somewhere on the spectrum too. If you are a woman who has struggled through life, picking up the pieces of relationships you had no intention of breaking, feeling weary from daily routines that leave other people clearly unaffected and know you are different but you're not quite able to put your finger on what sets you apart, then this story is for you.
The Request that Led to a Discovery
I had been asked to write a book about autism based on my work with teens and adults on the spectrum enough times through the years that I finally conceded in 2008. So began the process of compiling the many stories and concepts that I knew people would find helpful and putting it into a dicernable collection.
I would like to say that this was an easy and intuitive process. Writing for me often is. But the first draft of the first chapter of Autism Translated was a complete and utter disaster. I know this because the people who read it told me so. They described it as dense and unapproachable. They were right. In short, it was an intellectual and philosphical meandering about the cultural mores, in-groups and etic categories of the autistic community. Stuff only cultural anthropologists and people like me care about. It magnified the inner workings of my mind without censor and in hindsight, it is probably one of the most Foucauldian things I have ever read.
So I rewrote the manuscript and this time I focussed on the myths and misunderstandings people often have about autism. I focused on the fears, dreams and hopes that people on the spectrum hold onto. I included many real life stories that I have had the priveledge of hearing and being part of throughout the years. This version got much better reviews from the good folks who were willing to sit through the second draft. People were actually excited about the book now. But by this point I was strangely unsettled about the whole thing.
I had written this second draft as a professional and parent of a child on the spectrum which is a perfectly good point of view for a self-help book- except for one thing. For many of the examples and case studies that people had shared with me throughout the years, I was able to come up with similar examples from my own life.
I dismissed these personal examples as they occurred not wanting my own life experiences to bias and muddy the picture that I was painting of the life experiences and perceptions of people I was writing about. My circumstance was therefore irrelevant to the book. But even more important than any relevancy, I did not want to deal with the prejudice, the arrogance and the judgment that I had watched my clients bravely endure through the years. I did not WANT to have Asperger's because I did not want to deal with how I perceived other people would then consequently perceive me.
But wanting aside, at this point I had already unintentionally but systematically accumulated a body of evidence about myself that I could no longer ignore and while I had once summarily dismissed my colleague's jokes about being on the spectrum, I was beginning to think that maybe I should take them seriously.
Then a defining moment occurred. I went to the beach.
For years my colleagues had been trying to get me to go to the annual Surfer's Healing event where children with autism have the opportunity to ride the waves on a surf board with specially trained staff. I make it a point to avoid any place that may have a crowd but I felt that after 6 years I had run out of excuses to decline so I put my 5 year old son in his swimsuit and we drove out to Folly. I was barefoot as usual and wore jeans. The thought of wearing shorts or my swimsuit had not occurred to me but the sand was hot, even for my calloused feet and Adrain wanted to go in the water so I rolled up my pant legs which brazenly revealed unshaved legs. "Why didn't I think about these things?" I asked myself and we stepped into the water.
The sand and shells rubbed against my ankles and immeadiately shot pain up my spine and out through the pores of my skin. The sensation erased any vestige of embarrasment over hairy appendages and I instantly froze. Adrain pulled on my arm wanting to head deeper into the water. I took one more step and froze again. This time I looked around at the crowds of parents and therapists smiling and laughing with their children. No one seemed to be even remotely as miserable and out of place as I felt. No one else stood paralyzed in the water. Adrain pulled once more, hungry to explore the rhythm of the waves but at this point escape was my only conscious thought. I simply could not stay in the water let alone play with him there.
So I dragged him kicking and crying to a dry spot on the sand and started to build a castle. Here was something I could do with my son. I sculpted a turtle and a fish, images of sand creatures I had created for his older brother and sister when they were his age surfacing in my mind's eye. I didn't know if the choking sensation in my throat was a result of the discomfort my body still felt or guilt for just having depriving my son of a normal childhood experience.
But my colleagues arrived and there was no time to figure it out. Jodi rolled her eyes and made some smart-aleck comment about my inappropriate attire. Then instinctively as if she knew how much Adrain wanted to play in the water and that I was incapable, she gave me me her backpack. Hand in hand she and Adrain waded as far out as they possibly could, laughing and splashing like free spirits all the way.
The take home lesson was clear and I share it with you now exactly as the thought went through my mind, completely uncensored: "If you show up at an event for children with autism and appear to be the most incapacitated one there, this might be an indication that further investigation into the etymology of that incapacitation is warranted".
Being quirky is one thing. Being debilitated is another thing entirely. And at that moment I realized that I hadn't just been quirky my whole life. I had been debilitated. And even more than that, I had taken great pains to keep my debilitation a secret so that I could avoid drawing attention to myself.
I went home and did some serious digging into the family history and my past.
According to Bates family lore my engineering grandfather possessed "a brilliantly academic mind but lacked the ability to understand the human condition". He kept every rusty nail and screw organized in bins and boxes through the years. He invented clever, useful tools by recycling old items that other people would have relegated to the garbage can. I for one had always attributed his odd collections and inventions to the fact that he was a product of the depression and recall with fondness his recital of silly nonsense poems delivered with a mesmerizing but distinctly unusual and rhythmic cadence-
I eat my peas with honey.
I've done it all my life.
It makes the peas taste funny but it keeps them on the knife.
His oldest daughter, my mother remembers being "painfully shy" as a child and was bullied by the other students at school. "I've always had a loose screw in my brain, but at least I know it" she jokes about her difficultly processing information. She has often told me that parenting came as the result of sheer effort on her part rather than the maternal instinct her mother seemed to possess. She felt overwhelmed and ill equipped to raise children though I can attest to her giving it her best and have fond memories of art projects and decorating for holidays.
As children, my brother and I knew she couldn't keep a secret so Christmas and birthday presents were never a surprize. Neither were the sundry details of neighborhood gossip or dirty family laundry. These happenings were shared as a matter of fact from my earliest recollections, repeatedly sometimes throughout the years. My brother inhereted this candid form of expression. I on the other hand remained quiet and unrevealing about my personal life well into my 30's and equally unaware that some children lived in homes where the neighbor's recent affair with his 19 year old student and his ensuing divorce was not usual dinnertime conversation.
I am told that like my daughter, I was inconsolable as an infant.
I'm not surprised. I have distinct memories of being irritable well into my teen years. I would get upset when things didn't go the way I expected them to: a change in schedule, someone breaking a rule like the car moving before my seatbelt was buckled. My mother referred to this state as "coming unglued." Ironically, I held things together at school. It was as if I was a different child in public, polite and respectful while I was sullen and cantankerous at home.
I am also told that I was a consummate mimicker from an early age, imitating Lily Tomlin, Carol Burnett or my father absent the presence of any female comedians. There are pictures of me in my blue seventies turtle neck leaning against the door in exact replication of my father's posture. To this day, I find myself mirroring people's posture, expressions and accents when in their presence as if my own identity is a tabula rase waiting to absorb or shape shift the image in front of me.
I recall standing at the corner of the street where the Denver snow had begun to melt into a slushy puddle on my way to school one morning. I was already tired after the tedious and painful dressing ritual in which tags and seams felt more like cheese graters than protection from the elements. I grew more anxious with every minute as I watched the other children jay-walk to get to the school on the other side. There was only one option for me; to try and jump across the slush and risk getting my feet wet in the process. The thought that I could break the rule and cross the road somewhere else did not occur to me. The thought that I could walk the 20 yards back to my house and ask my mother for help did not occur to me. So I jumped and spent the day focusing on chilly wet socks instead of "See Jane Run" stories.
To this day I still say "probly" instead of "probably" and when I asked my mother why on earth she never corrected this egregious error she said "but honey, you always spoke like such a little adult. It was the only mistake you made and it was so cute". Apparently egregious is a matter of opinion.
In second grade a few of the girls informed me that I was stuck up and they didn't understand what I said because I "used big words". I didn't "feel" stuck up and certainly wanted people to understand me so I began to filter my thoughts carefully each time I spoke. An interesting side effect of fatigue is that I use bigger words and longer sentences when I am tired.
I have often been told that I repeat myself when I speak and have an eye blinking tic. Both these habits remain thoroughly entrenched despite my best efforts to eradicate them.
As a girl I referred to my mother as "mother". At some point I realized that other kids, my brother included, referred to their mothers as "mom" but this didn't feel comfortable to me. I remember watching the water flow from the faucet and spinning around in circles even when I was old enough to contemplate infinity and wear a training bra which was another thing that didn't feel comfortable. The other girls were excited about this particular rite of passage. I didn't want to have anything to do with it. I didn't want to have breasts and I didn't want to grow up.
My favorite story was Cinderella. My mother would tell me the story at bedtime. Apparently this got boring so she tried to change the story to make it more interesting. I say "tried" because I wouldn't let her make any adjustments. It had to be exactly the same, every time. I didn't make the connection between my own rigid version of Cinderella and my daughter's scripted and inflexible "Barbies" and "Harry Potter" stories until she had grown up and moved out of the house.
I was the only kid in my grade whose least favorite subject was "recess". I would sneak into a classroom during lunch to do my homework or read each day instead and although my school attendance was abysmal, doctors could find nothing wrong with me and I was a good student otherwise. Aside from attendance, I followed the rules and got decent grades.
When other students did not follow the rules, it got under my skin. Journalism that didn't follow the rules of journalism got under my skin. Bad grammar got under my skin. Constitutional violations got under my skin and people who were not logical got under my skin. The fact that people refer to the United States as a "democracy" got under my skin. The US is after all a democratic republic. In short, a great many things that no one else seemed to worry about irritated me to the point of mild obsession.
My favorite pastimes before age 14 included talking to my imaginary friend Belinda, daydreaming about fairytale lands and reading; the encyclopedia, the English Oxford Dictionary, The Complete Works of William Shakespeare, and a book called "The World's Greatest Speeches". I was especially interested in ethnic costumes of the world and architecture. I was also fascinated with snakes, frogs and lizards. I tried my best to bring them home with me to my father's disapproval.
Cleary I didn't have much in common with the other girls my age. They were illogical and in hindsight though I didn't recognize it at the time, they frightened me. But then again, most things frightened me. Today when I watch my youngest son run to the bus with anticipation and exuberance for another day, I remember my own impressions of the noisy smelly orange mode of transportation as not so favorable. I had tremendous anxiety each day about finding the right one at dismissal and worried that I might somehow miss it. This possibility and the dilemma of where I would sit once boarded rather than classwork consumed my thoughts each afternoon before the final bell rang.
My mother always commented on how well I got on with younger children and adults. She interpreted this as maturity but the fact of the matter was that I could have a normal conversation with adults and I could play silly games with young children, but what on earth was I to do with kids my own age? I for one had absolutely no idea. The first half of my life was spent in silent anxiety. I did not know to ask for help and I did not know to tell people that I was frightened. I pretended instead to be at ease.
I played the flute in band class and since I was always first or second chair I learned to play the piccolo too. I discovered that I could play by ear and started composing songs in my free time at home, hand drawing each line of the bar so that I could keep record of these melodies that flowed effortlessly from my mind. But band class was excruciatingly loud. Especially in between songs when the boys would blare their horns for what they referred to as "fun". I dreaded every minute.
I finally confessed my misery to my mother and my desire to drop out of band. Apparently she felt it necessary to pass on this information to the teacher because the next day day I was singled out by the buxom Miss Brinkerhoff. She took in a deep breath and pointed at me where I sat squarely front and center. "And sheeee thinks we are too noisy!" I don't remember what else she said but I'm fairly certain that this didn't make me popular with the other kids as I could hear them from behind hissing and adding their own comments about how square and retarded I must be to expect peace and quiet in, of all places a band class.
Oddly enough, I held no grudge against Miss Brinkerhoff though once again, I reported what had happened to my mother and the next day I was called into the band teacher's office where she gave me an apology. I accepted it and politely answered her questions to the best of my ability about the songs I was composing and what it is like to be able to play by ear. I assume that my mother had also shared this information with my teacher as I had never mentioned these details.
As I got older there was a subtle and underlying landscape in my consciousness that signaled I was different. In high school I took drama and speech classes, studying every detail of communication from posture to tone of voice and facial expression. The realization had occurred to me that I watched people's mouths instead of their eyes and while I could decipher basic emotions quite well- anger, sadness, frustration, happiness and peace, I was completely unable to discern how the other kids felt about me.
I simply could not decipher between a crush, jealousy, dislike, or feelings of friendship. And since I was painfully aware that I didn't know how to act or what to say, I often remained quiet, watching from the sidelines to avoid any embarrassing blunders.
I followed the rules. I did not smoke, or drink or swear and I did not understand why any other teenager would want to do these things. I could not see the connection between cussing or drinking and "being cool" whatever "being cool" was.
The doctors ran tests and could find nothing wrong with me but I missed more days of school than I attended. My mother would remark that I could muster up the energy to perform my role in a play and then like a switch I would shut off for several days, barely able to get out of bed.
In college I studied psychology trading in my love of iconic columns and flying buttresses for the Diagnostic and Statistical Manual. I learned everything I could about addiction, borderline personality disorder, OCD and bipolar. It wasn't long before I was diagnosed with depression and OCD. The thought had finally occurred to me that compulsively reading the criteria for OCD repeatedly throughout the day is an example of, well, compulsive behavior.
Line of Questioning
At some point in my early adulthood I realized that conversations should be more like a dialogue and less like a monologue so I prepared my two all purpose questions suitable for campus life: "What do you do for a living?" or "What are you studying?" I was able to start conversations from this point. I used the same techniques I had learned to write stories in high school journalism and interview my great aunt Elsie about growing up in the Wind River Mountains before cars and microwaves: Who, what, when where, why and how.
There seemed to be a schism in my mind. I could analyze the complex motivations and symbolism inherent in good literature but my understanding of "real life" and human nature was woefully oversimplified. Alcoholism was rampant in my family so I vowed I would not date or marry someone who drank. But that was virtually my only criteria for dating. The only other one being that an intimate relationship should be "until death do us part". Even "looks" and "attraction" were not a part of this equation. This proved nothing short of disastrous as I had no way to filter out relationships that violated my physical and emotional boundaries and according to my "rules" I could not exit these arrangements. I paid dearly for these dysfunctional relationships but that is a story for another time.
Obsessions and Paralysis
Addictions were not the only obsessive tendencies in my family. I naturally assumed everyone focuses completely on an idea, project or activity for 15 or 16 hours non-stop. In some ways this has been an advantage as I transform my curiosities into knowledge and then mastery of a subject or skill. It is only in my work with people on the spectrum that I have come to realize that I, like my clients, frequently need reminders to eat, drink and go to the bathroom when the urge to do so is eclipsed by my passion to complete a project.
It shows up in little ways when I must compulsively read every word on the prescription insert or scroll through all the comments at the end of a blog regardless of how pointless, obnoxious or banal they are. If my measuring spoon or a bowl is misplaced, I am unable to compensate for the missing item and it can take me 30 minutes before I can figure out how to proceed with dinner. It is a small irony considering the fact that I do not need to follow a recipe because I can easily invent my own. And when my computer needs repaired, I compulsively do whatever research it takes so that I can remedy the problem myself, even if it takes me three whole days and even if I have to learn code to get the job done. Of course this is more than impractical. It can be completely debilitating and I have had to learn to turn over tasks to those more qualified in spite of the urge to do everything myself.
If someone comes to my door unannounced I rarely answer. When the phone rings, I rarely answer. I view these incidents as a trespassing of sorts that require more energy than I typically can muster. They cause anxiety. I avoid most restaurants, grocery stores and clothing stores because they are visually accosting and require one to interact with strangers. I avoid Facebook and social media as much as possible because I don't know what to say and simply cannot understand the rationale for most of the content people post. If I must attend a professional event or go somewhere out of my routine, it takes me several days to recuperate.
I watch with admiration as my colleagues navigate the world with an ease and enjoyment I can only imagine. I recall the first time that I actually felt comfortable and at ease in my own body. I was driving across the bridge. I had put my elbow on the edge of the window and leaned my head on my hand. For once I did not feel "awkward". I was 42 years old.
Setting the Record Straight
It is also through the work with my clients that I discovered early on that much of what the "experts" have said about autism is flat out wrong. In all of the hundreds of people on the spectrum that I have worked with through the years and thousands more that I have talked to, I cannot think of a single individual with autism who is completely devoid of empathy or concern for others. They may show it differently or not know how to express it, but compassion runs deeply through the spectrum. If anyone tells you that people with autism can't experience empathy, quite simply, they are mistaken.
And while it has long been said that women on the spectrum are more profoundly "autistic" than males, this is only true in those cases where women have more severe cognitive challenges. Women with autism just look different than their male counterparts. Women's obsessions are often more socially "acceptable": dolls, makeup, family or psychology for example. Women it seems are often also better able to develop compensation skills at an earlier age and pretend to fit in even when they don't understand the motions they go through. To borrow a phrase from Alcoholics Anonymous, girls "fake it till they make it" quite well.
The female brain is wired differently with both the right and the left hemisphere operating more in tandem. I suspect this coordination may create an advantage for women with average and above average intelligence when it comes to learning these compensation skills and also works as a disadvantage for women with IQ's below 70.
People say I appear to be "normal" and while I don't profess to truly understand what "normal" is, I assume they mean that I don't stand out as particularly different. What they don't realize is the sheer force of effort it takes to participate in the required rituals and activities of society: To smile and have a simple conversation in passing, I can hold myself together but can feel awkwardness seeping out and wonder if I am being over the top or contorted with my facial expressions because the muscles in my face feel tense and strained. To look a person in the eye equals complete sensory overwhelm. I often do it. The resulting information jams up my emotional system and I feel it flood throughout my body down into my shoulders and fingertips. I used to think that the reason I understood autism so well was because I am a good listener. But now I believe I am a good listener because I have empathy for the autistic condition. No one has to explain to me why they spin in circles or obsess about Power Rangers. I just get it. Maybe my colleagues are right and I've got it.
How to set healthy boundaries
- Establishing Healthy Expectations for Yourself, Other People and Circumstances | Auptima Press
Includes helpful worksheets to help you recognize your own boundaries, in relation to other people and your environment.